inside:
fall/winter 2004
Back in Action •
PAGE 6
ONCE HOWARD COULDN'T WALK.
NOW HE WON'T STAY STILL.
Two Sides of the
Same Coin •
Speaking of
Nursing •
PAGE 8
PAGE 18
THEY'RE 13, TWINS, CHEERLEADERS.
OH, AND BY THE WAY, THEY’VE HAD
ABOUT 50 SURGERIES EACH.
FOUR NURSES TELL IT LIKE IT IS.
2
6
CHILDREN’S HANDPRINTS
table of contents
3
DEAR READER
Letter from the President
4
THIS AND THAT
Hall of Healthful Learning Children’s hands-on health museum is a field trip
destination that leaves a lasting impression on kids.
Futurama Some of the most advanced surgical equipment may sound like it
belongs in a sci-fi series, but it is used routinely at Children’s.
6
FEATURE
Back in Action The near-perpendicular curve of Howard’s spine threatened to
claim his mobility. But Children’s specialists turned a child who could barely walk
into a typical 9-year-old who won’t stay still.
8
8
FEATURE
Two Sides of the Same Coin At age 13, twins Ariel and Alixandria share a
concern about grades, friends, cheerleading routines, hairdos and futures. Born
with a genetic condition that limited the growth of their skulls, they also share an
extraordinary medical journey.
13
PARTNERSHIPS
The Other Way Around: Science Museum Visits Kids Science meets magic
when the Exploratorium comes a-calling at Children’s Hospital’s School Program.
16
14
IN THEIR OWN WORDS
Jared’s Journey A grieving mother remembers how living fully meant more than
merely staying alive.
16
CHILD LIFE
Lounging with the Teens Hanging out is a rite of passage. Our teen lounge is
just the spot.
Doggy Treats Sometimes, our best volunteers have four legs and furry tails.
Their visits are always a hoot.
18
COVER STORY
Speaking of Nursing Four nurses from the Hemotology/Oncology department
speak about themselves and the variety and complexity of a modern nurse’s life.
18
22
CHILDREN’S HOSPITAL & RESEARCH CENTER FOUNDATION
Triple Your Chances to Help Families Join Children’s President and CEO in
supporting a unique program through his two-to-one matching funds gift.
Taking a Stand: Domestic Violence is a Kids’ Issue Adam hurts when mom
and dad hurt each other. Stand up for families affected by domestic violence.
A Lasting Legacy to Advance Latino Healthcare A doctor’s office that comes
to you? ¡Ay caramba!
ON THE COVER: Six-year-old Maricella
has a great time with her Oncology Clinic
nurse Cynthia Freeman, RN. Read the story
on page 18.
w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg
FA L L / W I N T E R 2 0 0 4
dear reader:
With the winter holidays upon us, we count our
blessings and ponder our wishes for the future.
3
HandPrints
A C H I L D R E N ' S H O S P I TA L & R E S E A R C H C E N T E R AT O A K L A N D P U B L I C AT I O N
Children’s HandPrints is a publication
of Children’s Hospital & Research
Center at Oakland, 747 52nd Street,
Oakland, CA 94609; 510-428-3000.
Written, designed and produced by:
Jared’s (14) through the most difficult, the saddest
Communications Dept. at
Children’s Hospital & Research
Center at Oakland
665 53rd Street
Oakland, CA 94609
Phone: 510-428-3367
Fax: 510-601-3907
times in their lives. We are thankful for the experience,
Tony Paap
At Children’s Hospital & Research Center at Oakland
we have a lot to be thankful for. We are grateful for
the privilege to change the lives of kids like Ariel and
Alixandria (page 8) and to support families like
dedication and compassion of our nurses (page 18)
and the skill of our healthcare providers (page 6).
And we’re blessed with generous supporters like the
President and Chief Executive Officer
Mary L. Dean
Senior Vice President, External Relations
Tina Amey
Dreisbachs (page 24) who help us make sure that no
Receptionist
child is ever turned away for lack of ability to pay.
Debbie Dare
Our wishes are just as heartfelt as our thanks. We wish
that no child has to come to the hospital, but we
know some will. We wish that all who come receive
the medical care they need. We wish that we continue
Graphic/Print Designer
Susan Foxall
Operations Manager
Nina Greenwood
Marketing Manager
Cyril Manning
Senior Writer
to work with you—healthcare providers, leaders,
Bev Mikalonis
elected officials, community members, families,
Media and Community Relations Director
philanthropist, volunteers—to ensure that there is a
Vanya Rainova
place just for kids, a place for all kids, right here, in
Publications Manager
Editor
the Bay Area.
Venita Robinson
Sincerely,
Neile Shea
Media Relations Specialist
Senior Web Designer
Gary Turchin
Writer
Contributing Writers:
Tony Paap
Riannon Quezada
President and Chief Executive Officer,
Children’s Hospital & Research Center at Oakland
Photographers:
Chip Chipman
Alain McLaughlin
4
this
CHILDREN’S HANDPRINTS
this
this
this
that ANDthat ANDthat ANDthat
AND
this
AND
H A L L O F H E A LT H F U L
LEARNING
The eyes of a group of fifth graders
widen as they watch a three-way-split
screen showing a healthy lung, slowly
inhaling and exhaling in one window.
Next to it, another lung—a few shades
darker, somewhat grey— pulses rapidly
to the beat of the short breaths of a person with emphysema. The third lung is
being devoured by cancer.
“So what is one thing you can do to
keep your lungs healthy?” asks the
docent, who is halfway through a presentation on the anatomy of the human
body in the Hall of Health, Children’s
interactive, hands-on health museum. At
least half a dozen hands shoot up, and
the more impatient students speak out
of turn: “Don’t smoke!”
It’s obvious that the point sticks with
this young audience. As do other, less
serious but equally awe-inspiring facts:
this
this
this
that
one’s heart will beat about
2 billion times in a lifetime
and a person with straight
intestines would have to be
as tall as a house.
But for these children,
the field trip is more than a
fun science class outside of
their oh-so-familiar classroom in St. Patrick’s School
in Larkspur. The Hall of
Health has provided their
teacher with preparatory
handouts and follow-up
O H L O O K ! Fifth graders from St. Patrick's School in
Larkspur enjoy the exhibits in the Hall of Health.
worksheets, so after the
lecture, kids visit stations
in the museum, completing their assignments. “We want to make sure that this
is a coherent educational experience,
not just a two-hour getaway from
school,” says the museum’s director,
Lucille Day, PhD.
Evaluation studies of the Hall of
Health’s field trip programs on the human body
and drugs/addiction published in peer-reviewed
journals show that after
coming to the Hall of
w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg
this
this
t
that ANDthat ANDthat ANDthat ANDthat A
AND
Health, children report less desire to
experiment with alcohol, tobacco and
illegal drugs; a greater sense of control
over their own health; and greater
engagement in healthy behaviors such
as washing their hands and eating fruits
and vegetables.
For more information about
the Hall of Health, please visit
www.hallofhealth.org. #
FA L L / W I N T E R 2 0 0 4
this
this
this
this
that ANDthat ANDthat ANDthat
AND
this
AND
FUTURAMA
this
this
this
5
this
that
shrink to microscopic size and then ride
gizmos. The Stealth uses a high-end
around in someone’s veins, drive up to
computer to combine brain scans (MRI
Center at Oakland is famous for provid-
the source of some problem and fix it
and CT images) and infrared optics,
ing care regardless of a family’s ability to
from the inside? Well, Children’s doesn’t
giving surgeons a 3-D view inside a
pay. But did you know that we’re also
have a shrinking school bus, but in a
patient’s head. A computer screen
home to some of the most advanced
way, doctors can travel through a vein to
shows the position of a surgeon’s tools,
life-saving technology in medicine? A
fix some heart problems from the inside.
with accuracy down to the millimeter.
few examples include:
For some patients who have a problem
The Stealth can even superimpose a 3-D
called an atrial septal defect (ASD), or a
image of the brain inside the surgeon’s
hole in one of the heart’s main chamber
microscope. #
Children’s Hospital & Research
Picture-perfect heart
When most people think about 3-D
walls, Children’s experts can insert a
technology in the Bay Area, they think
catheter (a long, thin, flexible tube)
about the animated film studio Pixar.
through a vein and into the heart and
But if Shrek ever needs a heart exam, he
deliver a special clo-
just might want to come to Children’s—
sure device to the
where doctors use 3-D imaging to see a
location of the hole.
perfect picture of the beating heart. The
The device is made
technology, 3-D echocardiography, is
up of two disks, each
similar to the ultrasound exam that’s so
made of tiny wires
familiar to moms-to-be. For years,
encased in fabric.
however, the technology was too
Once in place,
rudimentary to capture the complexities
doctors allow the
and inter-relationships of a beating
two disks to
heart. And while 2-D echocardiography
expand—one on
has long been available, now Children’s
each side of the atrial wall. Within a
specialists can use ultrasound waves to
few days, the body’s own tissue
see the heart in three dimensions, which
begins to grow over the permanent
allows them to precisely measure the
implant, closing the defect forever.
chambers of the heart, see the state of a
disease or response to a therapy, and
even guide catheters and biopsies with
fantastic accuracy.
Spy camera for the brain
Okay, the breakthrough technology called the “Stealth Station,” which
allows Children’s surgeons to see a
A heart fix that only seems like magic
Remember the Magic School Bus?
How Ms. Frizzle and her class would
this
that ANDthat ANDthat ANDthat ANDthat
AND
patient’s brain during surgery, is not
actually a spy camera. But it’s more
amazing than most of James Bond’s
ALL CLEAR
Thanks to the
Stealth, surgeons
now have a clear,
3-D view of a
patient’s brain.
6
CHILDREN’S HANDPRINTS
AT T H E F I N I S H L I N E [left] The
Camacho family celebrates the end of a
grueling journey to a medical marvel.
A G E N T L E P E C K [right] from
Howard’s sister following the surgery that
straightened the boy’s spine.
MRI and more follow-up at Children’s, so
the family made the long drive to Oakland,
where Children’s orthopaedists and neurologists worked together to identify Howard’s
problem and figure out how it might be
fixed.
Howard Camacho has been here
many times before, and he knows exactly where the toys are. The 9-year-old zips
toward the small chest, which sits on the
floor at the end of a hallway in the
Division of Neurosurgery. He drops down
onto his hands and knees, sifting through
the assorted treasures, and soon his arms
are full to overflowing. He has claimed
anything, it seems, that can move as fast as
he does. In an instant he is scrambling low
to the ground, screeching a tiny sports car
past his neurosurgeon’s office. After a few
races he has discovered a plastic bicycle and
learned to yank the zip cord that sends it
careening across the carpet. Then he assembles a paper glider, one more thing to
chase.
Although Howard’s perpetual motion
seems to be the most natural thing in the
world, it’s actually a medical marvel. He
has come for one last visit to Children’s
Hospital & Research Center at Oakland to
finally be freed of his cervical collar and
pronounced fit to run, jump, ride bikes
and wrestle with his friends.
Howard was born with a congenital
spine disorder that was forcing his spine to
w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg
curve farther and farther forward, just
below the base of his neck. By first grade
he was experiencing odd symptoms—not
in his back, but in his legs. He was walking
on tip-toes to avoid shooting pain. His
mother, Norma, would see Howard walking through the snow near his family’s
Tahoe-area home, and his legs looked so
peculiar that she thought he was just joking
around.
But Howard wasn’t joking; he was slowly losing control of his legs. Eventually, the
pain of walking became too much for him
to bear.
Norma knew something had to be
done. “He would ask me, ‘Why are my legs
not like my friends?’” she says, speaking
through a Spanish interpreter. “I told him I
would give him anything to help him walk,
but my legs were not appropriate for his
size.”
Norma and her husband, Blas, consulted with Robert Haining, MD, medical
director of Children’s pediatric rehabilitation services, while he was seeing patients
at a clinic in Reno. Dr. Haining ordered an
by Cyril Manning
The doctors realized that the progressive curvature of Howard’s spine was not
only the cause of the problems with his
legs—but that it also threatened to claim
more and more of his body. His disorder,
called kyphosis, is most common among
the elderly—it’s what causes some people
to develop a hunch or hump as they get
older. But Howard’s case was genetic, not
age- or posture-related. It was also especially severe, and the near-perpendicular bend
in his spine was pinching his nerves. That’s
why it affected his legs, and as his body
grew, the nerve damage would surely leave
him paralyzed from the neck down.
Peter Sun, MD, Children’s chief of
Neurosurgery and orthopaedic spine surgeon James Policy, MD, recognized immediately that Howard’s best hope to walk
again would be to relieve the pressure on
the nerves through multiple, aggressive surgeries that would ultimately straighten his
spine. But such a process would not be
FA L L / W I N T E R 2 0 0 4
without risks. Operating so close to the
nervous system, especially that of a small
child, requires extraordinary skill, partly
because the child’s body is so small and still
developing, and partly because the tiniest
slip can damage the delicate bundle of
threadlike nerves cradled in the spine. Such
damage could instantly paralyze a patient.
Few medical centers in the world can
claim to be a better place for such a
procedure. Children’s team includes
experienced pediatric neurosurgeons and
advanced-practice registered nurses, whose
multidisciplinary approach taps the
expertise of orthopaedic specialists and
cardiothoracic surgeons in state-of-the-art
facilities. But the deciding factor in the
family’s decision to proceed with Howard’s
surgery was Dr. Sun himself.
“From the first time we met Dr. Sun,
he spoke to me the truth,” Norma says.
“He explained that Howard’s column could
be extremely damaged, that a misstep during the procedure could explode the nerves.
But he was also extremely confident. He
believed that Howard would walk again.”
“In pediatric neurosurgery, there are
some things you just can’t fix,” says Dr.
Sun. “As a surgeon who is also a father,
that’s the hardest part. So when there’s a
patient like Howard who has a complex
case, you really do everything you can to
find a solution.”
Although he was only in the second
grade, Howard approached his situation
and the potential surgery with a precocious
sense of seriousness and optimism. “He
understood well the reason we were going
to the hospital,” Norma says. “He wanted
to have legs that were strong enough to run
with all his friends.”
“At first I was like, ‘What’s surgery,
Mommy?’” Howard says. “I asked her if
they were going to cut me open with a big
knife.”
Both his parents and Dr. Sun explained
everything in terms that he could understand, and today he can explain that surgery is “like when a bone is broken and
they put you to sleep and fix it.” He even
talked about his condition to his class at
school. “Hey, I’m going to have surgery,”
he told his friends. Tracing a line just
above his heart, he reported: “They’re
going to open me here.”
“Dr. Sun told me that this was our
decision,” says Norma. “I knew we could
lose Howard at any moment.” But she
took great encouragement from her son.
“He wanted to walk with his own legs,” she
said. “He kept telling me, ‘Mommy, I’m
going to be fine.’”
Before surgery, Howard met Tom
Collins, a Child Life specialist who helps
kids understand the procedures they are
about to undergo based on their developmental level. Collins brought toys and dolls
into the preoperative area, using them to
play out what the surgery was all about.
Dr. Sun needed to access the front part
of Howard’s spine; he worked with pediatric heart surgeon John Lamberti, MD, an
expert in opening the chest. They delicately
maneuvered past Howard’s critical organs,
including the major heart artery to the
brain, the windpipe and the esophagus.
Then Drs. Sun and Policy removed the
7
cartilage disks between two of Howard’s
vertebrae (a procedure known as a corpectomy) completing the first step in reducing
the curvature of Howard’s spine.
The next steps would come more slowly—over three weeks in the hospital, as
Howard endured wearing weighted tongs
attached to his skull that literally stretched
his spine into position slowly enough to
avoid damaging his spinal cord. “After that
surgery, I was extremely sad to see what he
looked like,” Norma says. “He was swollen
and there were tears coming out of his eyes,
and there was a breathing tube in his nose,
and he couldn’t talk.”
Week after week, Howard recovered
from the trauma of surgery while his spine
inched toward normal alignment. “All that
time,” says his mother, “he never changed
the way he is, and he never lost his enthusiasm. Even then he was a joyful, happy
boy.”
The length of the stay was trying for
the family, but the end was in sight by the
time Dr. Sun and Dr. Policy operated
again, fusing together the vertebrae where
they had removed two disks. Over the
course of the next year, Howard slowly
recovered—first with his head confined to a
halo-shaped brace that held his spine in
perfect alignment, and later graduating to a
simpler neck brace. During that time, with
the spinal pressure off of his nerves,
Howard’s legs began to recover their
strength and energy.
Today, buzzing around the
Neurosurgery waiting area with two cars, a
bike and a paper glider, it is apparent that
Howard’s strength and energy have not
been sapped by his long ordeal.
And what is he going to do now that
his neck brace is finally coming off? That’s
easy. “I’m going to run and ride my bike,”
he says. “And I’m going to wrestle with my
friends.” #
8
CHILDREN’S HANDPRINTS
two sides of
ALAIN MCLAUGHLIN
the same coin
by Gary Turchin
Photography by Alain McLaughlin and Gary Turchin
w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg
FA L L / W I N T E R 2 0 0 4
Ariel and Alixandria Henley share a lot
with their peers. Like most 13-year-old
girls, they want to be liked and to fit in,
yet they crave being special and try to
carve out a unique identity. They are concerned about their hair and their cheerleader routines; they worry about their
grades, their friends, their futures. But
these twins are also warriors, and have the
battle scars to prove it.
On an afternoon awash with the warm
glow of Indian Summer, Ariel and
Alexandria are off school early. The girls’
mother, Monica Henley, is treating them
to their first major beauty salon
makeovers, which includes hair layering
and highlights, eyebrow waxing, the whole
works. They’ve come to an upscale salon
in San Ramon, not far from their Alamo
home, because the twins’ cheerleader
friend Jennie recommended it.
Ariel and Alixandria sit in front of
giant mirrors, watching strands of
their hair get slathered in color and
wrapped in tinfoil. The salon’s capes
surround them like purple cocoons.
From time to time, Monica, who is
waiting in the foyer, checks in on her
daughters. She looks at the girls’
scalps, wondering whether the bald
spots are a problem for the stylist,
Autumn. “No, I hardly noticed them,”
Autumn replies.
For many girls this is as thorough a
makeover as they ever get. But for Ariel
and Alixandria, this is a relatively minor
adjustment in their appearances. The bald
spots, finger-wide bands that stretch from
ear to ear, are a testament to the girls’
courage, the family’s fortitude and their
surgeons’ remarkable skills.
EYES, NOSE
AND BUMP
Everything
seemed perfectly
normal during
Ariel’s and
Alixandria’s first
days of life. Then
they stopped
breathing. Although
exams showed nothing irregular, the
breathing problems
persisted over the
next few months. In the meantime, the
soft spots on the twins’ heads developed
huge, unnatural bumps.
“When we taught them their body
parts it was ‘eyes, nose and bump’,”
Monica recalls. “That’s how much they
stood out.”
Many tests and consultations later, the
Henleys came to Children’s Hospital &
Research Center at Oakland, desperate for
help. At 10 p.m. they awaited a diagnosis
9
in the Emergency Department. Daniel
Birnbaum, MD, chief of Neurology, was
finally able to give a name to the twins’
travails: Crouzon Syndrome.
“My husband said, ‘Okay, give us the
medicine and we’ll be on our way,’”
Monica says. “We didn’t understand.”
They do now. Crouzon Syndrome is
an early closing of one or more of the
sutures of an infant’s head. As a baby’s
brain grows, open sutures allow the skull
to expand. If one or more of the sutures
close early, the skull expands in the direction of the open sutures. The result is not
only an abnormal head shape, but also
life-threatening medical problems.
“If we had not intervened early,”
explains Bryant A. Toth, MD, a craniofacial plastic surgeon, “they could have had
serious brain complications.”
During the initial surgery, performed
within days of diagnosis, the Children’s
team pulled the girls’ skulls up and the
fronts of their heads out, advancing their
orbits and foreheads. A few months later,
Dr. Toth enlarged the backs of the twins’
heads.
The Henleys went home with some
advice the family took to heart. “Dr. Toth
set us straight early on,” Monica recounts.
“He taught us that if we treat them like
they’re sick, they will act sick. He told us
not to put them in plastic helmets, that we
shouldn’t spend the next four years in the
house. He was adamant about that. ‘Let
them be,’ he said, ‘they won’t hurt any
more than any other kids.’ He was right,
we haven’t killed them yet.”
NEW LOOKS: [far left] Alixandria (l) and
Ariel (r) show-off their brand new ‘do’s.
[left] A little reading while the color sets.
[bottom] Alixandria lets mom in on a
beauty secret.
10
CHILDREN’S HANDPRINTS
people laugh and people stare
e,
but I walk on by like I don’t car
er’s ear,
oth
h
eac
in
h
they whisper and laug
very sincere,
’re
the look on their face says they
or how lucky they are,
they don’t know what it’s like
but one day I will be a star,
, think of me,
if ever someone’s mean to you
don’t let it get to you too,
are,
just remember how lucky you
are a shining star.
because in the eyes of god you
— Ariel Tyler Henley
THEN AND NOW: [bottom] Alixandria (L) and Ariel (R) wait behind a poster that illustrates
their changing faces; GAME DAY [center] Alixandria celebrates from the top of the
pyramid; [right] The twin Marauders share a mirthful moment.
SHE WORE THAT CROWN
“1-2-3-4-5-6-7-8-JUMP!” yells the
cheerleader coach and drill sergeant. In the
late afternoon, long shadows fall off the
side of Ygnacio Valley High School in
Concord where the Walnut Creek
Marauders cheerleading squad is practicing. Ariel is on one side of the line-up of
15 girls, Alixandria is on the other side.
Hands clap, hips swivel, arms fly, knees
bend, everyone leaps. They’re getting in
shape for Saturday’s Diablo Valley Youth
football game and, beyond that, the cheerleader squad competitions. By then they
hope to have their pyramid routine
worked out. Alixandria will be the girl on
top, hoisted on her teammates shoulders,
then tossed up into the air and caught.
Ariel will be one of Alixandria’s catchers.
“This is our best year ever,” Alixandria
says of her cheer mates. “All the girls are
really nice.”
It wasn’t quite so nice last year when
the season ended on a sour note after
Alixandria was voted homecoming queen
by the other girls.
“A few of the girls got really angry,”
Alixandria recalls, “they thought they
should have won… They wanted to know
who voted for me and said I shouldn’t
have won. They got really mean right in
front of me. One girl even said my mom
had changed the votes.”
“She took it so well,” Monica adds
later. “She’s used to people being mean to
her. But she wore that crown and no one
was going to take that away from her. She
said to me ‘Mom, why did they have to
ruin it? I’ll never have a chance to do it
again.’”
TRANSFORMATIONS
Chance may be a misnomer for that
singular opportunity. It took more than
chance: expert skill, advanced technology
and coordinated efforts between many
pediatric specialists to make cheerleading—and homecoming—possible.
After the early surgeries, the Henleys
went back to their lives, the twins in tow
with two older sisters and a brother.
Despite bandages or breathing tanks or
walkers, they were still treated like everyone else.
But all was not right
in their world. One of the
syndrome’s complications
is irregular growth of the
central part of the face,
resulting in awkward
appearance and severe
sleep apnea. “Ariel would
just stop breathing,”
Monica remembers, “I
can’t tell you how many
times we had to call an
ambulance and go to the
hospital.”
Monica faced one of
the most difficult decisions she would have to
make when her twin
daughters were 3 years
old. A tracheotomy could
w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg
GARY TURCHIN
relieve some of the airway problems, but it
could become a permanent feature. The
family warily scheduled the procedure but
before it was performed, a Children’s
pulmonologist suggested something
relatively new at the time—a continuous
positive airway pressure (CPAP) machine.
The machine pumps air constantly,
compensating for apnea.
Soon two big oxygen tanks furnished
the girls’ room. At night, Ariel and
Alixandria fastened breathing masks on to
their faces. Initially, the twins struggled
“I’m like everyone
else, I’ve just had a
few more surgeries
– Ariel
is all.”
“I remember telling Dawn (their longtime family nurse) that I wanted to look
like I used to before the surgery,”
Alixandria recalls, “and she said okay but
I’d have to get shots. I said, ‘Never mind.’
Dawn knew it wasn’t possible so she said
the one thing I hated most—getting
shots.”
EVERYONE HURTS WHEN
PINCHED
Perhaps the constant medical attention, the surgeries and the physical discomfort begin to explain why Ariel and
Alixandria lack memories of their early
childhood. “That’s okay, I really don’t
want to remember,”
Ariel says.
But Ariel does
remember the first day
of school, when she
made her “best friends
ever.” “Erin came up
to me and asked ‘Do
you want to be my
friend?’ I said ‘okay.’
She said ‘Let’s go and
find another best
friend.’ Okay.”
Ariel and
Alixandria found
acceptance in their
community and
schools. Their older
siblings had paved
the way through
the system,
acquainting many
with the family. Monica
visited their schools as well, educating
peers, teachers and staff.
“I’d ask everyone to pinch themselves,”
she recalls, “and then I’d ask if it hurts.
Well, it does these girls, too.”
The twins barely remember those
visits. When asked, they are surprised that
ALAIN MCLA
UGHLIN
with the apparatuses, but within two
weeks they settled into a routine that lasted for the next three years.
When Ariel and Alixandria were 5, Dr.
Toth and Martin Chin, DDS, performed
major mid-face surgeries to compensate
for the stunted growth and relieve the
sleep apnea. The surgeons broke the bones
and pulled the girls’ faces out. Using bone
from the twins’ hips, the physicians rebuilt
Ariel’s and Alixandria’s cheekbones. Little
screws stuck out of the girls’ cheeks,
allowing for further adjustment after the
surgery.
Despite Dr. Toth’s candid advice that
the Henleys should prepare for the drastic
change of Ariel’s
and Alixandria's
appearances after
the surgery,
Monica’s gut reaction was one of fear
and regret: her
daughters did not
look like her little
girls anymore and
she wanted them
“put back the way
they were.”
“We hadn’t yet
realized what a
major, major
improvement they
had made,” Monica
acknowledges today.
“They moved everything forward, giving
them the growth of a
10-year-old. They just
had to grow into that look.”
The girls accepted their new looks
reluctantly and fearfully as well. “They
didn’t want to see each other because it
was like looking at yourself and you don’t
look right,” their mother says. “But they
wanted to touch each other a lot.”
the visits happened. They also deny
being teased at school.
“There were a couple of kids,” mom
reminds.
“They weren’t in our grade though,”
Alixandria responds.
“Kids do make fun of them,” Monica
says privately later. At a football game
recently, one of the football players ran
down the line high-five-ing all the cheerleaders. But he skipped Alixandria. “They
don’t like to admit it, but it’s something
they do deal with.” Monica says.
THE STORYTELLER AND
THE WARRIOR
Today, Ariel and Alixandria are quick
to laugh and easy to engage. Monica says
that her daughters are shy around
strangers, that they’ve learned to be wary
of new people. The twins, however, state
differently.
Alixandria goes by “Zan” in the family,
12
CHILDREN’S HANDPRINTS
“I was reading this
quote. It said ‘Normal
people worry me,
everybody’s different.’
I think that’s very
cool.” – Alixandria
but from everyone
else she prefers all
five syllables.
Second-born, she
agrees that she’s
probably first in
talking.
“Everyone’s
always telling me to
shut up,” she says
and laughs. When
encouraged, she
readily launches into stories, fast-talking
teenager mode. A storyteller lurks inside.
Both girls like reading, but Alixandria’s
taste is particular. “I like stories where
people die,” she admits, “that’s the only
part that makes it interesting. I hate corny
stories where someone or some dog saves
them. It’s pointless.”
Alixandria also loves singing, dreams of
being a singer. Coaxed, she offers a verse.
“I’m all wobbly,” she warns, but tries
anyway. “I think you’ve locked your heart
away, but maybe I hold the key…” Her
voice is deep and resonant, soulful, wise
beyond its years.
Ariel seems the more aggressive of the
two, a little tougher around the edges.
She’s learned to take care of herself in a
world that’s not always perfectly kind. She
admits to being the moodier sister; well,
sort of admits to it. “I’m not moody unless
people bug me,” she says. “I just like to
speak my mind.”
“She’s moody,” Alixandria assures.
Ariel also doesn’t suffer fools. When
people stare at her or her sister, as they do,
Ariel can give back as good as she gets. “I
stare right back at them,” she says. She
balls up her face, scrunching everything
toward her nose to demonstrate. Her eyes
shoot daggers.
On the other
hand, she also has a
great sense of
humor. “One time
we were in this big
room,” Alixandria
relates, “and people
were all like looking
at us. Ariel just gets
up and says ‘Hello!’
real loud and waves
at everyone. It was the funniest thing
ever.”
Ariel doesn’t openly feel sorry for
herself, either. “A lot of girls, if they have
to have surgery, they go around moping
and groaning about it, but I don’t sit down
and feel sorry for myself. I can do everything like anyone one else can… I might
look a little different, I know I do, but I
don’t really care. It doesn’t bother me.”
“I’m just me,” she says a moment later.
“Everyday I go to school, I’m just like
everyone else, I don’t even remember,
unless I look in a mirror.”
A LOOK IN THE MIRROR
The mirrors at the beauty parlor reveal
two bright young faces, studying their new
looks. Alixandria chose to keep her hair
long, pulled back. Ariel’s cut is shorter,
with a flip at the end. The style suits the
bangs that fall down her forehead. They
serve a purpose, covering the slight protrusions of the hardware left in her forehead
from a surgery last year. Eventually some
of the hardware will dissolve to be replaced
by bone. Until then, she’ll probably stay
with the bangs.
True to form, both girls aren’t completely satisfied with their new ‘do’s. Ariel
is disappointed that her coloring doesn’t
stand out enough. She wanted it redder.
Alixandria is a little unhappy with her
eyebrows and goes back for a little more
waxing. #
ALAIN MCLAUGHLIN
For more information about Children’s Craniofacial Center call 510-428-3150.
w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg
FA L L / W I N T E R 2 0 0 4
13
LEARNING MADE FUN: [top right]
In the hospital schoolroom, children craft
disposable glasses to explore the mystery
of light and color by viewing the world
through lenses made out of colored gels;
[left] Marco, a visiting teacher from the
Exploratorium, explains the assignment to
7-year-old Fernand.
The Other Way Around:
Science Museum Visits Kids
by Vanya Rainova
There is magic: If you write your name in red on a piece of
white paper and look at it through red gel, your name will
disappear.
And there is science: White paper viewed through red gel
looks red because the gel absorbs (or blocks) all the other
colors reflecting off the white paper, keeping them from
reaching your eye. Only the red light can pass through the gel,
so the paper looks red. Red light reflected off
the red crayon letters mixes with the red
light reflected from the white paper, making
it hard to distinguish the red message from
the background paper.
Once a month, science meets magic in the schoolroom at
Children’s Hospital & Research Center at Oakland, transforming it into a place of fun and exploration. Incredulous gasps,
relieved sighs, excited giggles and attentive silence take turns as
kids build anything from kaleidoscopes to mechanical insects,
membranophones and kites, while learning basic principles of
physics, chemistry and other fields of science.
“Viewing phenomena from an artist’s perspective, or simply
incorporating an artistic element into our projects, makes
science more personal and relevant for a young person,”
explains lead teacher Marco Jordan, whose favorite project is
building a tornado, a rather elaborate affair, involving a fog
maker and fans. Marco, together with Vivian Altmann,
program director, and Pablo Dela Cruz, project manager,
works for the Children’s Educational Outreach Program, a
division of the Exploratorium, San Francisco’s hands-on
science museum for youth. The group has partnered with Children’s Hospital for 12 years,
bringing portable, age-appropriate exhibits to
kids at the hospital schoolroom once a month.
Accredited by the Oakland Unified School District,
Children’s School Program offers classroom and one-on-one
bedside instruction and activities, helping kids and teens keep
up with their studies. “For children, one of the toughest things
about being in the hospital is feeling isolated from their peers,”
says teacher Maggie Greenblatt. “That’s why keeping up with
school work becomes important to them. The Exploratorium
visits add an element of discovery and excitement to that.” #
14
CHILDREN’S HANDPRINTS
J A R E D ’ S
Sometimes we can’t even say it aloud: death is part of
the life cycle; grief is integral to the human experience.
For many people, including healthcare professionals,
accepting these simplest truths may prove the hardest.
But while the science of medicine focuses on diagnoses,
treatments and cures, at Children’s we believe that at
the heart of medicine one must also find strength,
support, compassion and humility. In this issue of
HandPrints, we’ve published an essay by a mother
who writes about the loss of her son to cancer.
With a moving honesty, she
describes the last days of Jared’s
life, the way Children’s staff
helped ensure that Jared’s staying
alive did not become more important than living itself, and why she
has joined the End-of-Life Care
Committee at Children’s Hospital
& Research Center at Oakland.
You can also read about the committee’s work and the opening of
George Mark Children’s House, a
pediatric end-of-life care facility.
Illustration by Neile C. Shea
w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg
J O U R N E Y
FA L L / W I N T E R 2 0 0 4
Someone once told
me I would feel better
when I "got over" my
WORDS
grief. As if the loss of my
BY RIANNON child was comparable to
QUEZADA
recovering from a cold.
You don’t get over grief,
you learn to live with, work through and
transform your grief.
When Jared was born, my husband cried.
When I nursed him I felt immeasurable
pride. From the moment they laid him on
my chest, I felt as if I had known him for
years. The chubby little blue-eyed boy was
not a stranger to me. He was born to be my
son, but in the four and a half years of his
life, he also became my friend. We shared a
love to talk and a need to be out of the house
and active.
When your child is diagnosed with cancer, life begins to revolve around a cure. Being
alive can easily become more important than
living. Jared did not allow that to happen.
Children’s Hospital staff did not allow that to
happen.
By the time we came to Children’s
Hospital, I knew that Jared had little or no
chance to survive his rare, aggressive illness.
Yet in the last 15 months of Jared’s life,
Children’s staff and I were able to focus not
only on his treatment, but also on his childhood. Throughout chemo, splenectomy, a
bone marrow transplant and many, many
other procedures, Jared remained a constant
source of laughter and joy. Sometimes he
drove me crazy with all the things he wanted
to do, see, touch, taste and hear. Somehow,
Jared knew he needed to experience it all, but
only had a short time to do it. I did my best
to make sure that he could.
During Jared’s last two weeks here on
earth I watched him breathe many times. I
kissed him often and told him I loved him
enough to begin annoying him. We took
daily walks, wandering through Walgreen’s,
picking out Halloween costumes and decorations for his hospital room. Jared chose a
robin costume.
Social worker Heather Fox and the
IN THEIR
Own
Hematology/Oncology staff made sure that
Jared could trick or treat one last time. By
this time he was swollen and pale and could
not walk. As my husband pushed Jared in his
stroller, I held back the sadness and put on
my festive face—one of the many faces I had
learned to wear in those fifteen months.
Some of the staff wore their happy faces, too.
Some of those faces melted as we pushed
Jared to his next stop. Until that day, I hadn’t
fully realized how much they truly cared for
him.
The night before Jared grew his wings I
spent some time alone with him. He had
been asleep for two days and I ached to hold
him. I practiced my own goodbye ritual with
him and told him that I loved him, but it was
okay to go home. I told him I would be okay.
At 7:45 a.m. on Oct. 25, 2003, my baby
boy left me behind to continue his journey.
This part of his adventure had to be done
without us... without me.
I don’t remember Jared’s funeral, his
memorial or much else from the first six
months after his death. Many holidays came
and went while I stayed numb. I never felt
the depths of grief all that time. When grief
came, it came hard. I spent many months
sleeping most of the day and faking the time
I was awake. A friend told me to fake my
good feelings. She said eventually, before I
realized it, they would become real. I am
slowly becoming real again.
Many people want to help me honor
Jared’s life. Not many want to discuss his
death. I have joined the End-of-Life Care
Committee at Children’s; it is my way of
honoring Jared’s next step, his hospice time,
his death. I hope my experience can make it
easier for other families.
I know that Jared is home. I know that
someday I will see him again. Until then, I
have had to find ways to “keep him here,” so
to speak. Jared’s life was not taken from him.
It was not cut short. Jared lived his life complete. Now, I must continue to follow the
path that has been laid out for me. I believe,
that part of my journey was to have known
and fallen in love with my amazing Jared. #
15
Supporting Compassionate
End-of Life Care
George Mark Children’s House, a freestanding
pediatric respite and end-of-life care home, has
opened its doors.
The 15,000-square foot facility resembles a
large family home with eight children’s bedrooms
that have the capacity to sleep a family member.
The five-acre campus also houses two family
suites, communal and private gardens, and
companion pet accommodations, as well as
computer, music, art, speech, and occupational
and physical therapy activity areas. Pediatric
physicians, nurses, social workers, spiritual care
counselors, home health aides and bereavement
specialists staff the home.
“Choices have been limited for families when
a child’s life is ending. They either die in an acute
care setting or at home, leaving family members
overwhelmed and devastated without support,”
says Barbara Beach, MD, medical director of
George Mark and pediatric oncologist at
Children’s. “George Mark provides an alternative
to help children die without pain, in comfort and
with dignity.”
Children’s Hospital is helping build the referral
program from hospital care to hospice care.
* * *
End-of-life care is one of the most challenging
assignments for any pediatric healthcare provider.
The experience raises many cultural, religious and
personal questions. What’s the right thing to say?
How do we optimize comfort and dignity? What
choices must parents make?
To explore the sometimes confusing and
always heart-wrenching process of caring for a
dying child, Children’s End-of-Life Care
Committee is working to establish the best possible procedures and protocols for palliative care.
“Our institution has always embraced familycentered palliative care,” says Marsha Luster,
MSW, chair of the committee, “but there’s always
more we can do. This is giving us an opportunity
to formalize procedures and make them available
so that everyone, in every department, can access
and learn from them.” #
CHILDREN’S HANDPRINTS
CHIP CHIPMAN
16
by Cyril Manning
It’s 7 o’clock on a Wednesday
evening, and the Teen Lounge is filling
up with patients. Tonight’s theme: fashion design.
Cecile is absorbed in her work on a
complicated stencil, which is a long,
wispy flower that she’s placed down the
center of a plain white t-shirt. She
paints each petal, each leaf and every
segment of the tall stem with slow,
thick brushstrokes. Purple is the
dominant color, with hints of green. A
seventh grader who has been in and out
of Children’s inpatient units more times
than she would care to count, Cecile
isn’t feeling so well tonight. But being
here gives her something to focus on
outside of her medical condition, her
hospital bed and the many “pokey
things” that nurses seem always to be
sticking into her veins.
The evening gatherings provide
something different for each teen—for
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some they’re an escape from doctors
and nurses or a place to socialize, for
others it’s just good to be with older
kids in a place that often focuses on the
needs of young children. Tonight, while
Cecile and a couple of other teen girls
work on t-shirts, Brian—almost an
adult—doodles absent-mindedly with
paints while gabbing on his cell phone.
Across the room a patient and his visiting buddy laugh their way through
board games with a pair of hospital
volunteers. In the corner, another pair
of boys are consumed by their heated
PlayStation match-up.
“It can be a tall order to ask kids
who’ve never met each other, who may
not feel well or look the way they do
outside the hospital, to get together
and hang out,” says Suzanne Berkes,
the Child Life specialist who runs the
teen program. “But the opportunity to
interact with other kids and just be a
A R T AT N I G H T [top left] Volunteer Brenda
Waller steadies the stencil while Adriana paints;
[top right] Brian doodles with paint; [bottom]
Cecile works on her t-shirt design.
teenager or preteen is so important.
Sometimes they have great conversations
about what it’s like to be sick. Other
times everyone just plays board games
and video games or paints t-shirts.
Either way, it helps to have some time
for normal, everyday things even though
the hospital is not a normal, everyday
place.”
“You meet all sorts of people here,”
says Cecile. “It’s kind of like a little
civilization.”
By the end of the night, Cecile has
added a colony of colorful butterflies to
her design. She’s tired of being in the
hospital. But her bright-colored t-shirt is
a reminder, she says, “that good things
can come out of something that seems
bad.”
by Gary Turchin
Nick, 11, is one of the hospital’s
most popular volunteers. Kids wait
anxiously in the fifth floor playroom for
his visits, hoping to get a chance to play
with him. When Nick finally shows up,
his feet slide awkwardly along the
smooth floor, making him seem a silly
guy.
Nick’s not all that silly. He’s calm,
well behaved and exceedingly gentle. He
also happens to be a dog, a border terrier
who comes regularly with his best friend
and guardian, Elizabeth Soares, to cheerup kids at the hospital. Elizabeth and
Nick are from the Friendship
17
GARY TURCHIN
FA L L / W I N T E R 2 0 0 4
G E N T L E M A N N I C K Whether pulled,
pushed, snuggled or petted, Nick is never
rough and always ready.
Foundation, an organization that
provides the healing comfort of
companion animals to people of all ages
who are hospitalized or confined.
Dogs and their owners come to
Children’s three times a month, visiting
not only the playroom but also children
who can’t leave their rooms but can use a
snuggle in bed. The kids respond with
bright smiles and lots of friendly petting.
When they are shy or intimidated, as
a few are, Elizabeth uses the tail-first
strategy.
“Sometimes kids feel safer approaching from the back,” Elizabeth says. She
demonstrates by turning Nick around
and wagging his tail at 1-year-old
Marcus. Marcus stays safely away, only
once darting in for a touch. Nick doesn’t
seem to mind. He’s as compliant as a rag
doll no matter what kids do—pull his
tail, drag him in a wheelbarrow or
snuggle him in their laps.
Of course Nick and other visiting
pets have been carefully trained and
tested before they’re ever brought near
kids. “These dogs are beyond reproach,”
Elizabeth assures. “They are re-tested
annually.” But elsewhere, Nick does have
his vices. “At home, he barks and chases
squirrels,” Elizabeth says. A guy needs his
outlets. #
18
CHILDREN’S HANDPRINTS
Speaking
of
by Vanya Rainova
Photography by
Alain McLaughlin
Nursing
Sometimes stories take on lives of their own. On these pages
of HandPrints, we planned to feature a single nurse, much like
we have done with physicians and researchers in the profile
series of previous issues. But there was a recurring theme
during Jim Riddel’s interview: the variety within the world
of nursing far exceeds the public image of the profession.
Measuring one’s blood pressure, changing dressings and
administering medication treatment do not even begin to
speak about what nurses do. That’s why we decided to interview four nurses within the same division—Hematology/
Oncology—who worked in different areas and had varying
responsibilities. We learned that from tricking defiant kids
into taking their medications to breakthrough research, from
phone counseling and diagnostic screening to testifying in
courtrooms, nurses do it all. But we also noticed a common
theme—it was easier to get a sense of the experience of being
a nurse than of the profession’s logistics. The thread of compassion and human touch weaved through all these nurses’ stories.
MARIANNE WITH BRIAN
Marianne Ohlson, RN
Hematology/Oncology inpatient unit, 5 South
29 years at Children’s
Children on Marianne’s unit have a life-threatening illness; their families face probably the most
important, most strenuous battle there is. Some
kids have been diagnosed recently, others have
relapsed into their diseases, most are undergoing
chemotherapy and radiation. The majority will triumph over illness, but a few will not.
Marianne’s voice is soothing, her demeanor
leveled and reassuring. Sometimes, at the end of a
storm, she may go into an empty room and let the
pressure out, but during emergencies, chaos and
plain business, she is known for remaining calm.
How did you end up working here?
I started working at Children’s when I was a
senior in high school. I had a part-time internship
as a registration clerk. The hospital paid half of
my salary and the school paid the other half. At
the end of the summer between my junior and
senior years I was hired by the hospital as a clerk.
I met my husband here; he worked as an ambulance attendant back in those days. So Children’s
Hospital is more than half of my life; I’ve been
here almost 30 years and I’m not 50 yet.
I eventually got my nursing degree and began
working on C1, a floor where children were
placed by ages, not diagnosis. I ended up getting
assigned to Hem/Onc patients often. I enjoyed
the continuity of care. They have longer stays and
you get to know the family and child, as opposed
to a child with a urinary tract infection, whom
you barely get to know before the family’s gone.
Here [at 5 South] you get to know and work with
the whole family—grandparents, aunts, even
neighbors. Sometimes you’re pulled in and you
become part of the family in a way.
FA L L / W I N T E R 2 0 0 4
19
MARIANNE WITH DAKARAI
Given the relationships you develop,
how do you deal with death?
The first two years were very hard.
There were support groups at the hospital that helped us learn how to take care
of ourselves. The first few years I went
to every funeral and it was really difficult. Now I know not to do that. I only
go if I have been particularly involved in
the care of a child.
But what helps me most is that I
know how much I help families. Even
when I am involved in end-of-life care, I
am still helping them, and it is so
rewarding. And then, the children who
do survive—who are most—may come
back in a year to see you, after they are
done with their treatment and their hair
has grown back, and they come running
down the hallway to greet you… That
is such a rush, and it totally keeps me
here.
Is there a visit you will never forget?
I will never forget this young man
who was diagnosed with leukemia when
he was about 6, finished his treatment,
and came back as a teenager just to say
hi. Of course I didn’t recognize him, but
I recognized the mom. He had grown to
be this big, buff, handsome young man.
I made him show me his driver’s license.
What do nurses do for families?
When a child is diagnosed with cancer, the family is going through probably
the biggest crisis in their life. We help
them get through that. Doctors give
families tons of information, explain
what they’re going to do, answer all the
family’s questions as much as they can,
and then they go on to the next thing.
But we’re there 24/7 to explain and
teach families.
Families learn to administer shots,
change dressings, draw blood, flush
broviac catheters. And some of them are
multicultural families who may speak no
English. With the help
of medical interpreters,
they too learn. In a few
weeks they are pros.
What keeps nursing
from getting
boring?
It’s never boring. I
learn something every
day. There are always
new challenges, new
medications, new ways
of doing things. Medicine has gotten so
much better. There are so many more
medications and resources to keep a
child comfortable. For example, we used
to do all our procedures in the treatment
room with just a little bit of pain medicine. We would do spinal taps and bone
marrows right here. Now they’re all
done in the OR and that’s much better.
Why do you think there aren’t
enough people choosing to be a
nurse?
Because the media makes it look
horrible. They make it look as if you get
horrible assignments, and as if nursing is
a very hard field, which it is, but it is
also, again, such a wonderful field. I
think the word isn’t out about how
wonderful it is.
How is being a pediatric nurse different?
If you chose pediatrics and it is in
your heart—it is not for everybody—
then you stay in it and you love it. With
some children you wouldn’t know they
are getting chemotherapy. They are so
resilient. They are running up and
down, playing basketball. To adults you
may say “We’re giving you chemo,” and
they’re sick before you even get the
chemo in the room.
What have you learned from your
patients?
I’ve learned how important it is to
be honest and put everything on the
table. I assure families that we won’t ever
not tell them what we’re doing. They
appreciate that.
What is the typical day of a floor
nurse?
You come in and get your assignments. Usually, you take care of three to
four patients. You need to prioritize your
tasks for the shift. We give blood products, antibiotics and various IV medications, along with oral meds. When they
have procedures, we make sure they get
there and sometimes go with them.
We’re here for eight hours. Then the
next shift comes in. It’s like passing the
baton. You don’t go home and worry
about not having done this or that,
because you know your colleagues will.
This is a 24-hour cycle.
How does your work affect the rest
of your life?
I go home and count my blessings
every day. I am more patient with my
own children. When they’re arguing
about cleaning their bedroom or staying
up late or doing their homework, I say,
“Okay, at least I have my children to
argue with about such things…”
_____
CYNTHIA WITH
MARICELLA
Cynthia Freeman, RN
Hematology/Oncology Clinic
18 years at Children’s
Cynthia’s smile is quick, her laughter
—boisterous. After five years on 5 South,
she moved to the clinic, where patients
continue to be followed after they are
discharged from the hospital.
Cynthia wins over her kids with her
respect for and trust in them. She knows
old souls do live in young bodies. “If
nothing else, I’ve learned that children
are instinctively so much more aware
than what we give them credit for,” she
says. “Sometimes parents ask that we
don’t mention the word cancer, but I know
the child knows.”
Compare working on the floor to
working at clinic.
At the beginning it felt like jumping
out of the frying pan and into the fire.
On the floor, little surprises do happen
during the shift, but at the end of the
shift you’re through, you’re done, and
you know someone else will be there to
pick up from where you left off. Here, if
something doesn’t get done you think
and worry about it; you take it home
with you. Sometimes I would place a
call to a family after work because I
w w w. c h i l d re n s h o s p i t a l o a k l a n d . o rg
would remember that I needed to convey something, which I didn’t have the
time to do in the office. And sometimes,
you make a simple phone call, and you
learn a kid is having a fever, and it is no
longer a simple call.
But in clinic I see a broader spectrum of patients. I can talk to a patient
who is now 30 years old and married
and comes to see us once a year. I can
also be the first one to know when
someone has relapsed because I’ve gotten
their labs before their regular clinic
appointment.
I always try to tell my friends who
are working on the floor about the kids
I see in clinic after they have left the
floor and who are doing well, just to
remind them that there are many, many
kids out there whom we have helped.
Is there a typical clinic day?
Yes and no. On clinic days I come
early to prepare. We’ve already seen
who’s coming and gone through the
charts. Whatever lab results we need and
we don’t have, we get. We make sure we
have the chemotherapy, the labs and
scans we need.
Then patients start coming in; it
becomes a wild card. Sometimes you
think a patient is coming in for one
thing and you learn there is a different
issue. You have to make decisions on the
spot. But it is really fun because you get
to do patient interaction.
How did you decide to become a
nurse?
In high school I knew I wanted to
do something medical. I volunteered at
a hospital. I took pre-med classes while I
was in nursing school. The plan was to
work for a while to help finance a medical education. But when I became a
nurse, I said “This is it! I love this!”
What are some of the challenges
nurses face?
Sometimes it just seems there aren’t
enough of us to go around. Sometimes
you work so hard and you may still feel
that you have not done a good enough
job because you’re spread too thin.
Insurance companies are another
hassle. We have authorization specialists
and usually don’t have to get involved.
But in complicated cases we do talk to
the case manager. There are weeks when
you feel you’re fighting an uphill battle
trying to get anything authorized, and it
FA L L / W I N T E R 2 0 0 4
is discouraging that you have to jump
through hoops to provide care for a
child.
So what keeps you going?
Parents may call simply because
their child has a cold. They might be
worried because the first time the cancer
presented itself like a cold. How can you
not be worried? It’s happened, and once
it happens, you think it can happen
again. When you get calls like that and
you can calm parents down, and they
say “Oh, I feel so much better now that
I talked to you,” you feel fulfilled.
Despite aggravations, it’s that human
touch that keeps you going.
Unfortunately, sometimes the public’s
perception is that we’re here to serve
physicians. I know that when Florence
Nightingale was first developing the profession, she said something like that she
was there to assist physicians in their
21
plan and the nurses carry it out because
we know how to carry it out. We provide patient care in different ways but
we have a common goal.
JAMES
How do people react when you tell
them you work with oncology
patients?
People always say “Oncology? I don’t
know how you do that! I couldn’t.” And
I tell them, “You know, you have to give
a lot but you also do get a lot back.”
_____
James Riddel, PNP
Hematology/Oncology Clinic
12 years at Children’s
Speaking about his profession, Jim is
passionate and candid. His nursing career
has taken him through many roles in
multiple departments, and he is quick to
zero in on some of the more sensitive
issues in the nursing profession, including
gender stereotypes and stature within the
healthcare system.
What don’t people know about
nursing?
What a lot of people don’t realize
about nursing is that patients are admitted to the hospital because they require a
nurse’s care. If they didn’t require a
nurse’s care, they would be seen by the
doctor in an outpatient setting. But people don’t always focus on that. I personally feel that we owe a lot to the staff
nurses.
It took me a long time to realize that
nursing is a profession of its own.
work, but I don’t think she meant to say,
ever, that we would be perceived as the
handmaids to the physician. In assisting
physicians, we’re here to take care of the
patient.
So you’re saying that there is a hierarchy in the public perception?
The common theme is that we
weren’t smart enough to be doctors. But
it is not about being smart enough to be
a doctor, it is about what type of relationship you want to have with your
patient and what type of care you want
to provide. My vision is that nurses and
physicians are totally collaborative in
care. The physician writes a treatment
Why are male nurses fewer than
female nurses?
Before Florence Nightingale instituted her reform, many men were nurses.
Walt Whitman was a nurse in the Civil
War. It is also true that homeless, drunkard, prostituted women took care of
patients in the hospital before Florence
Nightingale made it a respectable profession for women. When that occurred, a
lot of women went into nursing; you
have to remember that they weren’t
allowed into medicine at that time. I
think there is still that ridiculous ‘stigma’
that nursing is a woman’s job.
[ C O N T I N U E D O N PA G E 2 6 ]
22
CHILDREN’S HANDPRINTS
Triple your
chances to
help families
Lucas Jacksondaley suffered severe heart problems
and a brain hemorrhage
within hours of his birth, and
required 17 surgeries as a
baby and toddler. Emerging
from his medically fragile
condition, his development
would be far from normal.
His parents, Jacquelyn and
Lee, struggled to help him
grow and thrive. They turned
to the Parent-Infant Program
(PIP) at Children’s Hospital
M A K I N G T H I N G S B E T T E R Coping
with a child’s developmental difficulties can
& Research Center at
be trying for the whole family. At the
Oakland. Through ongoing
For Tony Paap, Children’s president and CEO, the
Parent-Infant Program specialists help hunhome and clinic visits, PIP
pressing need to reach out to families like the
dreds of kids and their families through
staff provided intense, oneJacksondaleys is more than a hospital priority—it’s a
therapy, counseling and support.
on-one therapy to help
personal commitment. That’s why he has promised funds
Lucas develop motor,
from his family trust to establish an endowment that will
speech and social skills. They gently introduced him to new
sustain PIP for years to come. But you don’t have to be the CEO
situations, helping him overcome the challenge of over-stimulation
of a children’s hospital to make a difference. In fact, you can join
and to learn to engage other children. Today, Lucas loves new toys,
Tony in supporting PIP through his two-to-one matching-funds
is adjusting smoothly to preschool, and gets along nicely with his
gift: your $100 gift will mean $300 for the program, and by giving
pint-sized playmates.
$500 you can make a $1,500 difference.
For over 25 years, PIP has helped thousands of families like the
Your gift will be about far more than helping individual
Jacksondaleys to cope with developmental disabilities. Facing
families, because building an endowment creates a stable source
Down syndrome, cerebral palsy, vision and hearing impairments
of ongoing funding. And that is crucial. While state budgets may
and other types of delays, these parents endure emotional
shift from year to year with the political winds, parents like Jackie
upheaval, overcome enormous challenges to family life, and often
and Lee Jacksondaley will always need somewhere to turn.
must navigate a maze of related medical issues.
For more information or to support the PIP endowment,
The Parent-Infant Program reaches out to some of Northern
call Ken McKinney at 510-428-3885, ext. 2846, or email
California’s most vulnerable families, yet it’s threatened by state
[email protected]. #
and local budget cuts.
w w w. c h o f o u n d a t i o n . o rg
FA L L / W I N T E R 2 0 0 4
23
Taking a Stand: Domestic Violence is a Kids’ Health Issue
Adam is 9 years old. His parents treasure him. They shower him with gifts and
attention. They hardly ever raise their voices at him and would never, ever raise a
hand in anger. As for each other, that’s a
different story. They yell. They fight.
Sometimes glass breaks, or someone gets
hit or thrown to the ground.
Some would say that their problem is
not our business—that a children’s hospital
should tend to Adam’s health and nothing
more.
We believe differently. Adam is a child
at risk. As a witness to traumatic events,
the stress of his environment may be linked
to bad behavior, poor performance in
school, sleepless nights, high anxiety,
migraines, future drug or alcohol abuse,
and a long list of other problems.
But identifying and advocating for children like Adam is a sensitive issue. That’s
why in 1999, Children’s created the
Domestic Violence Education and
Screening project, or DOVES. The project
provides education, advocacy and interven-
tion directly to at-risk families, and works
to make the healthcare environment a place
where families can safely disclose domestic
violence and get help. It is the only specialized treatment program in Alameda
County that addresses the link between
domestic violence and child abuse.
This year, DOVES expanded its mission by becoming the primary on-site
health partner at the new Alameda County
Family Justice Center, which works to prevent and respond to violence against
women.
Recognizing the importance of such
work, the Blue Shield of California
Foundation awarded a $100,000 two-year
grant to the Center for Child Protection,
which is home to the DOVES project.
You too can stand up for families such
as Adam’s by helping us expand DOVES
outreach programs even further. To find
out how, please call Ken McKinney at
510-428-3885, ext. 2846, email
[email protected], or visit
www.chofoundation.org/donate. #
Corporate Caring
For years, Bay Area businesses have raised millions of
dollars for Children’s Hospital
& Research
Center at
Oakland through
the Children’s
Miracle Network.
In 2004 alone,
corporate sponsors have raised more
than $1.4 million—providing crucial
support to our commitment to providing the highest level of care in
the world to children in need,
regardless of their families’ ability
to pay.
Children’s
Miracle Network
sponsors in 2004
included KFRC (host
of Children’s Radiothon for Kids),
Costco, RiteAid, Wal-Mart, Marriott
International, Blockbuster, RE/MAX
and Credit Union for Kids. #
To learn more about giving opportunities at Children’s Hospital, please contact Children’s Hospital &
Research Center Foundation at 510-428-3814 or visit www.chofoundation.org.
24
CHILDREN’S HANDPRINTS
Lately, pediatrician Roxanna
Martinez, MD,
has been doing
something pretty
amazing for Latino
kids. Because
Spanish-speaking
children face many
barriers to healthcare
and health education, she
brings her doctor’s office
to them. That’s right—in
order to serve the kids at four predominantly Latino elementary
schools in Alameda County, she
pulls up in a converted RV that
serves as the mobile medical
unit Leo’s Legacy.
Dr. Martinez and colleague
Erik Fernandez, MD, supported
by others in the Children’s
community, provide vital basic
health services to underserved
Latino children. They break
down barriers between medical
professionals and Latino
communities, and fight to provide
Spanish-speaking children with access
to healthcare and health education.
With a partner organization called
Kerry’s Kids, Leo’s Legacy works to
ensure students are up-to-date on their
immunizations and flu shots and to
educate parents and teachers on good
nutrition and the basics of asthma and
diabetes, which are leading causes for
hospitalization of Latino children.
In an era of shrinking state and
federal funding for community health
services, Leo’s Legacy is truly remarkable. It was the idea of
Marianne and Ronald Dreisbach, who established and funded
the program in honor of their beloved employee Leo Marquez,
A Lasting Legacy
to Advance
Latino Healthcare
w w w. l e g a c y f o rc h i l d re n s c a re . o rg
OUT AND ABOUT
In the mobile health
clinic, Dr. Roxanna
Martinez of Leo’s Legacy
gives immunizations to
Spanish-speaking kids
right in their neighborhood. The program is
funded by Marianne and
Ronald Dreisbach.
who died in 2002. (To learn
about how the Dreisbachs
did that, read the sidebar.)
The Dreisbachs’ great
idea is growing. In 2003, the
program doubled its reach
with a generous donation
from the Children’s Hospital
Branches and additional
financial support from
individuals. Leo will not be
forgotten, and his Legacy is
ensuring that the healthcare needs of Latinos will always be a
priority at Children’s. #
FA L L / W I N T E R 2 0 0 4
SMART GIVING:
Do good (for kids)
and do well (for your future)
The Dreisbach family’s story is a good example of how
philanthropy at Children’s Hospital can support children’s
health and be a wise financial decision, too. Here’s how
they set up Leo’s Legacy.
By transferring highly appreciated stock into a taxexempt charitable remainder trust, the Dreisbach
family:
• Avoided capital gains tax
• Received a sizable charitable income tax deduction
• Established a long-term income stream
• Offset additional taxes by contributing the income
stream to their Family Foundation to fund Leo’s
Legacy
By setting up a family foundation through the Family
Legacy Fund program at Children’s, they:
• Have set up a simple, flexible and inexpensive framework for charitable giving
• Receive the maximum charitable tax deduction available under the law
• Advise where the funding they provide is to be used
• Establish an endowment that will exist for generations
or for a set term of years
And, by combining these two financial planning vehicles,
they enable Children’s Hospital Oakland to reach out to
thousands of Latino children in the East Bay.
The Children’s Hospital & Research Center Foundation
can work with you or your financial advisor to establish a
framework for charitable giving that meets your philanthropic and financial goals. For more information, call
Margaret Zywicz at 510-428-3361.
THIS IS NOT LEGAL ADVICE. ANY PROSPECTIVE DONOR
SHOULD SEEK THE ADVICE OF A QUALIFIED LEGAL,
ESTATE AND/OR TAX PROFESSIONAL TO DETERMINE
THE CONSEQUENCES OF HIS/HER GIFT. #
25
Give a lasting gift
this holiday season!
Join other donors and employees of Children’s
in securing the future of your hospital!
Deadline for
Spring 2005
installation:
December
31
Dedicate a Plaza Brick
to a loved one, friend or colleague!
Every day, hundreds of visitors and employees
come through the main entrance of Children’s and see
the inscribed bricks which friends and employees of the
hospital have dedicated in order to honor colleagues,
memorialize friends or family members or acknowledge
a generous contributor. Visit the main entrance of Children’s
and read the moving and inspiring inscriptions.
Place your request online: www.chofoundation.org
b uilding
bloc k s
Children’s Hospital & Research Center at Oakland
#
#
#
#
12’’x12’’ Mission Red Paver - $ 2,500
12’’x12’’ Sand-colored Brick - $1,000
12’’x 6’’ Plaza Brick – $ 750 (new item)
6’’x 6’’ Plaza Brick – $ 500 (new item)
For more information on this and other naming
and dedication opportunities, please contact:
Ken McKinney, Annual Fund Manager,
Children’s Hospital & Research Center Foundation,
Phone: 510-428-3885 ext. 2846,
E-mail: [email protected]
26
CHILDREN’S HANDPRINTS
[ C O N T I N U E D F R O M PA G E 2 1 ]
How has nursing changed over the
years?
Patients who are in the hospital are
much sicker because we do a lot of
work at home, or because the insurance
companies don’t allow patients to be
admitted to the hospital for certain
things, or because they have to be
discharged sooner.
On a different note, the field of
nursing has gotten so much broader.
Nurses may have a variety of roles. We
have vice presidents who are nurses.
Nurses are getting into basic science
research.
You are working toward a PhD. What
is your research about?
One of the frustrations in diagnosing von Willebrand’s disease [a common
bleeding genetic disorder], is the discrepancy in results that you can have
among different types of labs. There can
be difficulty in making the diagnosis
with the tests we have available now, so
I’m looking at genetic markers to hopefully pinpoint the diagnosis. I have a
population that we see at Children’s and
I hope to include other hemophilia
treatment centers in the region.
So will research be a second
career?
It’ll be number five. I have a master’s
degree in early childhood special education and taught preschool for four years.
Then I was a child life specialist at the
children’s hospital in Washington, D.C.
That’s when I decided that nursing
would be a better fit for me. I went to
work as a tech in the Emergency
Department, while I attended nursing
school. My first job as a nurse was in the
ED. When I transferred to Children’s, I
was first an ED nurse, then worked as a
nurse clinician in the Infectious Disease
department where I was a case manager
and research coordinator for the
HIV/AIDS program. Then I moved on
to help develop the Pediatric Advice
Line, a phone advice service.
I was doing a second master’s at
UCSF to become a nurse practitioner,
when I became a temporary case manager for Hematology/Oncology. I ended
up staying there for seven years as the
coordinator of the general hematology
service and then the Hemophilia and
Thrombosis Treatment Center.
That is quite a diverse career. How
has it changed your understanding
of nursing?
It’s amazing how much prouder of
being a nurse I am and how important I
feel the profession is. I really want to be
an advocate for it.
_____
Nadine Haley, RN
Day Hospital
17 years at Children’s
“She can be tough, but she is wonderful,” one of Nadine’s colleagues said
about her before the interview. But
Nadine’s thoughtfulness and openness
give a noble glow to her no-nonsense
attitude. In her turf, the Day Hospital,
Nadine sends a clear message: patients
first, other concerns can wait.
Do you think you’re tough?
Those who don’t know me may only
see my tough side. But people who
know me know that there is also a soft
side to me. My patients know me as
very stern and that I do it because I care.
How does your sternness help?
I think it can help kids in difficult
family situations if there is no consistent
authority figure. I’ve also seen kids who
are very sick and their parents naturally
want to do everything to please them to
a point where there are no boundaries.
Sometimes having a nurse who sets limits helps them.
What attracted you to nursing?
I was a nurse’s aide in my junior and
senior years in high school and all the
way through college. It helped finance
my education, along with grants and
NADINE WITH OMAR
FA L L / W I N T E R 2 0 0 4
loans. It is my third career and there is
more to come. I was an analytical chemist
for a pharmaceutical company for seven
years and a microbiologist for a private lab
for five years. Then I went to nursing
school for two years. Right now, I am just
finishing my certificate as a legal nurse
consultant. You can work as a consultant
for physicians, insurance companies, do
evaluations, be an expert witness on malpractice issues, abuse, etc. I’m also thinking of trying to get a real estate license.
But before all that, I was a pre-med
student. I got accepted and
I decided not to go.
Why did you decide not
to go to medical school?
being a sponge: you have to be able to
absorb, but you also have to be able to
release. You have to be flexible because
things change in a heartbeat.
Physically, when you’re on the floor,
you spend 85 to 90 percent of your day
standing. In the Day Hospital it can vary
depending on your assignment. Standing
and movement are important. But I don’t
think a person who has a physical handicap can be eliminated from nursing,
because what’s on the outside does not
necessarily play into your ability to be in
nursing. People in wheelchairs can find something
to do in nursing.
How has your work
changed who you are?
I came from an underprivileged home. I was the
Any nurse working in
oldest of five with a single
any area, if they have a
parent. Finances were very,
caring heart, it’s going to
very hard. I worked all the
change part of who they
way through college, did a
are. In Hem/Onc you see
five-year program in four
so many life-or-death
years by studying all year
struggles that you treasure
round. When I got accepteach moment of each day
ed into medical school, I
with your kids.
NADINE WITH DELILAH
had already gotten the job
What have you learned
at the pharmaceutical comfrom kids?
pany. At first I was going to work for six
I’ve learned that a kid can tell when
months only, but the money was too good.
you don’t know what you’re doing.
Did you regret it?
I did at the time. I retook the tests and
I decided I was going to be a PA. But my
daughter was 2 years old. I had just moved
out here, and the only school I got into
was in Los Angeles, so I opted to not go.
What do you like about nursing?
One thing I like about nursing is that
you’re not stuck in one area. You can do
different specialties and it is easy to keep a
sense of growing. When I feel stifled and
feel like I’ve learned all I can learn, I
change areas.
What should one be able to do, emotionally and physically, to be a nurse?
Emotionally, you have to be open, not
rigid but giving and receiving. It’s like
Sometimes they’ll give you a chance and
sometimes they’ll be blunt and tell you
that you don’t know what you’re doing.
You may have kids who are more experienced as patients than nurses as nurses.
They’re open, they are honest and playful,
which makes it easy for me to be open,
honest and playful.
Can you think of an honest and playful
thing a kid has told you?
I just had a patient before I came
down here who said “I’ve known you for
15 years, I’ve loved you for 13, but I liked
you for 2.” #
27
President and Chief Executive Officer
Tony Paap
Acting Senior Vice President and
Chief Financial Officer
Sandy Bemiss
Interim Senior Vice President and Chief
Operations Officer
David Bertauski
Senior Vice President and Surgeon-in-Chief
James Betts, MD
Senior Vice President, External Relations
Mary L. Dean
Interim Senior Vice President, Medical Affairs
Howard Gruber, MD
Senior Vice President, Research
Bertram Lubin, MD
Vice President, Legal & Risk Management
Marva Furmidge
Vice President, Ancillary & Support Services
James Jackson
Vice President & Chief Information Officer
Don Livsey
Vice President, Nursing
Nancy Shibata, RN
Vice President, Human Resources
Greg Souza
President, Children’s Hospital & Research
Center at Oakland Foundation
Michael Petrini
Children’s Hospital &
Research Center at Oakland
Board of Directors
Harold Davis, Chair
Pamela Cocks, Vice Chair
Arthur D’Harlingue, MD, Vice Chair
Robert C. Goshay, PhD, Vice Chair
Barbara May, Vice Chair
Edward Ahearn, MD
Jeffrey Cheung
Henry Gardner
Donald Godbold, PhD
Howard Gruber, MD
Scott Hoffinger, MD
Howard Jackson
Watson M. Laetsch, PhD
Alden McElrath
Masud Mehran
Linda Murphy
Betty Jo Olson
Tony Paap
Howard Pien
Mary Rutherford, MD
Peter Sheaff, MD
Harold C. Warner, PhD
Story requests, comments or suggestions for
Children’s HandPrints may be e-mailed directly
to Vanya Rainova ([email protected]), or
sent to 665 -53rd Street, Oakland, CA 94609.
Kids Helping Kids Get Well
Holiday Cards ‘04
For many companies and individuals, sending greeting cards to
clients, customers, friends and family is an important part of the
holiday season. Children’s Hospital & Research Center at Oakland
offers specially designed holiday cards created by Bay Area children.
A
It’s the most wonderful
time of the year.
Happy Holidays!
by Jennie, age 12
Bret Harte Middle School,
San Jose
B
C
# Benefiting Children’s Hospital & Research Center at Oakland
# Order online at: www.kidsholidaycards.org
or call (510) 428-3814
# Presenting some of the best of our 2000-2003 collections
D
Wishing you a holiday season
full of fun and festivities!
Peace on Earth
by The Crocker Highlands
Adventure Time Morning
Kindergarten Group
ages 5–6, Oakland
by Ginger, age 14
Castro Valley High School,
Castro Valley
I
G
H
May this holiday season
bring you happiness and peace
by Katie, age 13
Foothill Middle School,
Walnut Creek
E
F
May joy surround you
this holiday season!
Wishing you the gifts
of the season…
Peace, Joy, & Good Cheer!
by Haley, age 7
Wildwood Elementary School,
Piedmont
by Fabiola, age 14
Piedmont Middle School,
Piedmont
K
L
J
‘Tis the season to be jolly!
Hats off for a happy
holiday season!
by Jordan, age 11
Bret Harte Middle School,
San Jose
(Blank inside)
by Lisa, age 15
Alameda High School,
Alameda
Merry wishes for
a wonderful season!
by Alessandra, age 13
Piedmont Middle School,
Piedmont
Warm holiday wishes!
by Reena, age 12, Adriana, age 8,
& Rachel, age 8
San Francisco Bay Girl Scout
Troop 2315, Fremont
May your holidays glow…
with the joy of the season!
by Rose, age 7
St. Brendan School,
San Francisco
by Rachel, age 13
Piedmont Middle School,
Piedmont
Please visit our website at www.kidsholidaycards.org to order online or to download an order form, or call (510) 428-3814.
Non-Profit Org.
U.S. Postage
PAID
Oakland, CA
Permit No. 3
747 Fifty Second Street
Oakland, CA 94609-1809